Colon cancer happens to young people too (Part 1)

I really didn´t start this blog with the intention of it being all about cancer but the fact is, right now, this is what my life is about.  It won´t always be that way but at this precise point in time my days and weeks are very much measured in terms of which treatment and how much longer.  It follows that I should do the mandatory ´how did you get here´ bit because everyone wants to know, I know this because no one is shy about asking.  This is a GOOD THING in case that made it sound like it wasn´t.  I have colon cancer and it is a fact that people are squeamish about talking about ´bottom trouble´ ´dodgy tummies´ or my own personal euphemism ´digestive issues´.  So if telling people how it happened to me makes them more proactive about their own health then all the better.

When I was first diagnosed I recounted this story more times than I can count and could reel off the timeline of events from memory.   Now I have to think a little.  It all happened so gradually, so much that when I finally got a diagnosis and mentioned to people that symptoms had started a year earlier many were horrified I had waited so long.  But it only seems obvious in retrospect.   Towards the end of last summer, out of the blue, I started getting the famous ´dodgy tummy´.  It was nothing specific to start, suddenly needing to rush to the loo urgently maybe once a day, once every couple of days.  Periods of feeling bloated, more gassy, things that had never happened to me.  I started identifying with all these adverts aimed at women that tell us to eat more probiotic yoghurts or take certain digestive aids to help with The Bloat.  Previously I had found these adverts completely alien and irrelevant.  Who were all these women with dodgy digestive systems? Why didn´t it happen to men?  So I assumed I had suddenly, at 37, hit some kind of hormonal change and joined this new sisterhood.

I vaguely debated going to the doctor but I felt sure it would be a waste of time, that I would be dismissed with vague suggestions of IBS and offers of vouchers for yoghurt.  And so the summer turned to autumn turned to winter and the symptoms increased a bit, but still really vague.

At this point I feel like I have to apologise.  I wish I could tell you one day I woke up pooing blood, rushed to AE and was diagnosed.  Something nice and clear for you to note down as a big red flag.  But I can´t.  It was months and months of just feeling like my tummy or something in my whole digestive process just wasn´t quite right.  I went on holiday over Christmas for 3 weeks and had a great time, I felt quite bloated still but also put away a terrifying amount of amazing food so had a sneaking suspicion that the ´bloat´ was actually me just getting chubby.  I don´t think I was entirely wrong either, putting on a stunning 3kgs in 3 weeks!  (The food was AMAZING)

I finally went to see the GP in February with little hope of any real help but thinking it would be good to have a starting note in my file to keep track of progression if it did get worse (HA!).  As expected he made vague comments about IBS and raised a request for a colonoscopy, telling me it should be around 3 months´ wait.  At this time I was getting fit, my weight gain on holiday spurring me on to try a fitness programme I had read a lot about, Kayla Itsine´s Bikini Body Guide.  It is not for the faint hearted but it gave me small (30 minute) chunks of almost daily exercise and totally fit in with my schedule.  The initial programme runs for 12 weeks and I started in January.  I completed 18 weeks of the programme and was loving it, seeing amazing changes in my body, trying to convince friends to join me.  This is worth noting because it is important you realise that I was not wasting away or having symptoms that were crazy worrying.  I was working, looking after my kids, exercising daily, until about June.

During this time it was all VERY SLOWLY getting worse, the running to the loo, occasional spotting of blood (“probably haemorrhoids” said the doc, although I have never been examined for them and certainly never suspected I had them) and eventually by around the beginning of June feeling increasingly tired and wiped out.  I did visit the doctor a couple of times more during these months, including a visit to A&E one weekend when I had a worrying amount of blood, but each time I was effectively told he could do nothing more, he had put in the petition and we had to wait even as I explained worsening symptoms including fatigue, increasing blood “hemorroids”, losing weight “a few kilos isn´t significant”,  increasing urgency combined with period of constipation.  By may I could be alternating periods of lying on the sofa totally listless with rushing to the bathroom up to 15 times a day and a couple of fun new symptoms had put in an appearance:  waking at night and hurtling out of bed in the direction of the bathroom up to 4 times a night and ´tenesmus´ which is particularly uncomfortable and is a feeling like you really have to poo when there is nothing there.  It is not dissimilar to early labour contractions.  In your bum.  I had also started noticing a weird sensation of ´hanging´ low down in my pelvic floor  and began to think maybe all the exercise was to blame.  Maybe it  was too much for me, it was designed for 20-40 year olds, maybe my post partum bod (and pelvic floor) were no longer made for all this jumping around.   I asked the doctor whether I could be suffering a slight prolapse and he referred me to the midwife across the hall who declared it nothing worse than a desperate need for intense pelvic floor rehabilitation exercises.  So we carried on.

By May I was expecting a call for the colonoscopy and when I didn´t hear I called them and was told it would be at least 3 more months.  Still my doctor said he could do nothing.  I burst into tears, feeling increasingly frustrated at the lack of interest in my case or action to do anything about it.  I had even asked if they could refer me to a dietician in the meantime to see if diet changes could help and was as a result referred to the nurse next door who handed me a pamphlet sponsored by Danone telling me to eat plenty of fibre, fruit and vegetables.  Yeah, thanks for that.  Stellar advice.

My aunt died of colon cancer in her early 50s and my mother had polyps removed as a result of her own subsequent checks.   I told my doctor this.  At every appointment I mentioned this and it was dismissed.  I told him – I TOLD HIM – “I am 37, I have two young children, I don´t want to be one of these tragic cases you read about in the paper” and he said, calmly, “it happens, people do die waiting for treatment” but the whole time his perspective was “you are young, colon cancer does not happen to people your age”.  Guys.  That is just not true.  Even I knew then that was not true.  He suggested trying A&E again to see if they could speed up a referral.  I rang my husband in tears telling him “I feel like something is really wrong and no one is doing anything to help”.  I didn´t really suspect cancer but whatever it was the symptoms were becoming unbearable.  It was all I talked about with friends.  When my boss called I couldn´t help telling her how tired and run down I was.  In all this time my doctor did not lay one hand on me to check my abdomen or for haemorrhoids, nothing. The first visit to A&E ended with a doctor (who did at least palpate my abdomen and ask more pertinent questions about my symptoms) telling me that if I wasn´t dragging myself into hospital bleeding to death there was nothing she could do for me.  The feeling of impotence was overwhelming.

The second visit in A&E seemed a bit more productive, the doctor suspected Ulcerative Colitis but yet again was apparently powerless to do more than pass a letter to the Digestive Specialist requesting a faster track appointment.  When two more weeks passed with no word my husband finally, frustrated and worried, insisted we visit a private doctor.  As it turns out it was the same Digestive Specialist that worked in the state sector.  He also suspected Ulcerative Colitis and scheduled a colonoscopy for a week later.  Which is when things got.. interesting.  I have to leave the rest for another day because this is turning into an essay and meanwhile my kids are downstairs and their rough and tumble fun sounds like it might turn sour at any moment.  Life calls.

 

Advertisements

imageBeautiful child. Button nosed boy. He is by turns fire and brimstone and love and cuddles.  All his emotions are REAL and NOW and STRONG.  He woke up screaming. Angry screaming. Because sometimes he just does. And right now he is snuggled under my legs under the duvet giggling, playing hide and seek with the cat.  I adore him.

 

Say Yay for the Good Days

Today has been a really good day. Most of my days are good days and If I sound smug maybe I am, just a teeny bit. Can you have cancer AND be smug? Haha. I am not sure.

But, you know, the last lot of chemo wiped me out and made me feel properly down for the first time in ages and although it only lasted a day or two it was still shitty. Now I am on my ‘rest’ week before the next dose and I feel great.  I took the kids to school, met girlfriends for coffee and a long chat, went home and had two more girlfriends come visit and we chatted and drank for a couple of hours more AND – get this -none of these conversations were about cancer OR illness! Then this afternoon we met friends for a drink while the kids all ran around for a couple of hours, followed by pizza for dinner. Boring? No. NORMAL.  Not exciting in the slightest but so deliciously normal.  Excitement is not a feature of my life at the best of times. What I love so much about where I live is the calm, so-chilled-it-is-practically-horizontal pace of life.  It would be some people’s worst nightmare but for me it is heaven.  Today was just a normal day. I barely thought about treatments, or feeling unwell, or tired, it all just felt okay.

I am so grateful for my life. When I got my diagnosis, before we knew how bad it was, when we were still waiting to know if it had spread anywhere else, I had this overwhelming feeling that it was okay. That if the life laid out for me had to go this way I can be okay with it. Because this life has also brought me my husband and my beautiful boys who are my everything. My life has been so blessed and if all that has gone before is linked to that which comes after then I accept that deal. I accept it time and time again because if the alternative was a life without my husband, my boys, all my memories, but not to go through this, I wouldn’t want it.  I will take what I have and I take it gladly, it is all part of the same journey and I am still sharing it with those I love above all.

image

 

image

Crochet.  It sounds like such a granny thing to do, but I really love it.  I am very much a beginner but the beauty of crochet is that even with little to no experience you can quickly get the hang of a whole range of stitches and techniques.  And with the wealth of tutorials out there on the web, it has never been easier to find a project you want to do and go for it.

I first learnt to crochet on summer holiday in Sicily.  We had gone to visit a family friend that used to babysit my older sister and I when we were tiny.  When we later moved abroad she came one summer and helped my mum look after us.  I don´t remember her from those days although my Mum always stayed in touch with her and talked about her often enough for us to know she was someone who cared for us.   Many years later, when I was about 14, mum sent my sisters and I to stay with her for a couple of weeks, where we were welcomed like long lost family.  I don´t remember much of this holiday, there was swimming, beach, some trips to tourist destinations, no doubt, but mainly I remember the heat, a horrific neon pink sunburn that still makes me wince to think about it, and a long haired boy that I was infatuated with for about a week; a lothario-in-training who fed me cheesy lines that even 14-year-old me saw straight through and had the Dad of the family in a mild panic, no doubt imagining the numerous scenarios a foreign girl could get into if left to her own devices around a group of teenage Sicilians.   Luckily for him, and me, it was all very innocent and the only souvenir I took home that summer was a photo of the pair of us that would serve as a source of endless embarrassment for many years rather than an STD or unwanted teen pregnancy.  Result!  We then went back as a family for another visit when I was about 20 and it was on this trip that our friend taught me to crochet.  I promptly started the purple, pink, white and blue blanket in the photo above and stopped suddenly when I realised I had chosen an entirely too expensive wool which, by that point, only lasted only one round per skein.   Deciding it would be a perfect size for a baby blanket for my future offspring I folded it up and put it away. I did, indeed, use it as a baby blanket for both of my children and when those days passed it was again folded up and put to the back of a cupboard.   Apart from a very wibbly wobbly scarf I made for my husband a few years ago the only other project I have undertaken, and completed, is a large blanket, of which I am, possibly excessively, proud.  I adore it.  We had it on the sofa as a snuggle blanket for a while but in the end I have snuck it up to my room for my bed.

Yes, all of this IS going somewhere and that is to say that one of my ´not resolutions´ this year is to keep a crochet project or two on the go at all times.  After all it is so easy to dip in and out, do a little bit here and little bit there.  And before you know it, you have a blanket!  I would like my kids to each have one, and maybe start making them as presents now and again.

In all honesty I do sometimes worry about my mortality, I can be as peppy as I like but nothing makes you think about the more morbid side of life like a cancer diagnosis.  I have thought about leaving my kids without a mother.  How that would be for them.  What I could do to leave something of me behind.  Some kind of physical reminder or comfort.  Part of that is what lead me to start this blog.  Somewhere I can write about my day to day and also about memories that are conjured up even by the most mundane of tasks.  It is not that I think I am going to die imminently, or even in the next few years.  I really hope I won´t (!). But the truth is that none of us know.  We all know that and yet we do our best to ignore it and push it away instead of accepting it, really accepting it, as the inevitable truth.  I will die.  It may not be from cancer, and it may not be soon, but I will.  One day, willing that all follows the natural order of things, my children will not have a mother.  They may even be old and grey, and wouldn´t that be nice? It makes me happy to hope for that.  But even if this blog is gone, I like to think I will have the posts saved somewhere, squirrelled away.  So if they wanted to reach in and find a snapshot of what I was like when they were 4, 8, 12, 15, they can.  And as they read they can be with me again, for a while.  As they snuggle under the blanket I made for them.

As for the crochet, in the end I have unearthed the original blanket that started it all and decided to upgrade it to a full size blanket.  It deserves it really, after all of these years.

 

It is what it is.

image
stormy seas, but we are still having fun…

I have cancer. I find that very hard to write.  I want to delete it and write ´I have a cancerous tumour´ instead.  But the fact that I find it hard to write or say that exact phrase fascinates me, so I am going to leave it there.  You might say; of course it is hard to say (you poor thing), but actually in my experience most people that have cancer say ´I have cancer´ as often as required.  Which can be surprisingly often.  Yet I have never said it out loud, to anyone.  “They found a tumour and it is malignant” has been my go-to phrase and in all honesty that is how I see it.   My dad had leukaemia, Acute Lymphoblastic Leukaemia to be precise.  One that is more common in children and unusual in adults.  He was very ill, very very ill.  My parents were on holiday in South Africa when they found out and they, with my little sister, were immediately flown home with a nurse accompanying them. He went straight into hospital where he was started immediately on a gruelling regimen of chemo and radiotherapy.  He got thin, he lost his hair, he had horrible side effects.  Sometimes when we visited we had to wash our hands with antibacterial gel and wear face masks.  He was very unwell for quite a while.  That was cancer.  What I have isn´t the same.  Though, really, it kind of is. Isn´t it?

The reluctance to label myself a ´cancer sufferer´ says as much about what I know about other people´s expectations as it does about my own history and experience with serious illness.  You tell people you have cancer (even using my spin on it) and after the initial reaction of surprise, shock, pity, you can usually tell they are thinking ´but you look so well!´ Because I do.  The particular drugs that I have been prescribed have not had the side effect of causing hair to fall out.  I have lost a few kilos, and as I wasn´t underweight to start they are not missed.   My appetite has always been a constant companion in my life.  I have never been one of those people (yes we envy them even though we know it is wrong) to sigh ´when I get stressed I simply Can. Not. Eat. A. Thing.´  Ha! if only.  I can eat when I am tired, awake, bored, stressed and every other situation in between.  So I lose weight when I feel unwell but the first day I feel better I more than make up for it.  And the result is hovering somewhere a few kilos under my ´starting´ weight but very close to my ideal weight.  YAY! AM I RIGHT? (gotta take the perks where you find ´em).  This sentiment, unsurprisingly and completely understandably, is the reaction of most of my (girl)friends.   The main side effect has been a crushing fatigue but it comes in waves and as I do not venture out when I am low, no one really sees me like that.  They see me when I have slept well, got up and put on makeup and done my hair and feel mostly fine.

When I was first diagnosed I did what most women probably do and went home and stared at myself in the mirror, scraping my hair back, trying to imagine what I would look like with no hair.  I would love to say I wouldn´t care, it is only hair, it grows back.  And that is true.  Any of us would shave our heads in a second if it was that or death.  We would do it and we would deal with it and it would be okay.  It would.  But that doesn´t mean it is easy or wouldn´t break your heart.  And it is partly because you don´t want to be ugly, let’s be honest. If we thought we looked better with no hair we would all be rocking the early 90s Sinead O´Connor ´Nothing Compares 2 You´ skinhead.  Most of us are not blessed with beautifully rounded noggins and petite features and big doe eyes.  Most of us get up in the morning and do not feel like we can face the world until our hair has been tamed into some kind of presentable style that reflects the image we want to project that day.  Bad Hair Days are a real thing, people.  If I can start the day in a grump because my hair won´t do what I want and looks atrocious, how will I feel being bald?

But it isn´t just that. It is not just the vanity.  It is the LOOKING LIKE A CANCER SUFFERER.  To my kids, the world in general, and to myself.  My kids were really upset about the possibility of me losing my hair.  They have seen both of their grandmothers go through breast cancer and lose their hair and I am not sure if that played a part in their reaction or whether it was purely the idea that I would look different, and ill (and that all their friends would know) that horrified them.  I got it.  I wasn´t offended by their reaction because as a kid I would have felt the same.  Hell, my Dad shaved off his beard once when I was about 9 and I swear I didn´t recognise him.  When I was visiting home from University for the first time since my Dad had started treatment I walked into the hospital room and saw a thin, bald, man lying on a bed in a room where they had told me my big burly long haired dad would be.  I was 18. I wasn´t a small child.  I should have, could have, thought that he would not look well.  But I wasn´t prepared and what I saw scared me.  I stayed stuck with my back to the wall during the whole visit. I can´t remember if I even said much.  And I felt mean.  That it probably hurt my Dad to see me react like that.  But I was 18.  And I wasn´t prepared.  And it was my genuine, real, heartfelt reaction and it was what it was.  Because I saw someone very different from the person I knew.  Someone very ill.   It is THE image of cancer.  It shoves our fear right into our face and makes us confront it.  And I am really grateful that at least for now it is one less thing my kids have to deal with.  But it isn´t just the kids.  We have been very open about my diagnosis.  It is not a secret or something I am scared to share; with friends, acquaintances, parents of the kids´ friends, neighbours.  And yet.  I wouldn´t want anyone and everyone to know.  Losing my hair would be like a declaration “something is wrong!” “Look! Look!”.  I am relieved to not have to deal with the unwanted attention or to see in the mirror an altered version of myself, reminding me that things, at least for now, are most definitely NOT NORMAL. I think it would be really hard.  Really hard. Not losing my hair has helped me maintain the perception of myself as healthy and ´normal´, to myself and all of those around me.

So I have lost a few kilos and kept my hair. Ergo I do not look ill. I do not look like a cancer sufferer.  So is this why I do not identify as a cancer patient?  It must help that I am also an eternal optimist.  A potentially annoying trait that has me piping up with peppy little asides to whichever negative situation arises. “we have to change 3 tires on the car” thank goodness it isn´t all 4!  “the washing machine broke” at least the dryer still works!  It is annoying.  We have lived through various situations when even I have heard myself and thought “Good lord SHUT UP” or burst out laughing because I can appreciate the ridiculousness of always finding something positive. My husband often has cause to point out that we don´t always have to look on the bright side.  Sometimes we can just accept feeling like things are rubbish.  And I get that, I really do.  Having cancer has certainly helped me to appreciate that sentiment more (more of which in another post, another day).  But still, STILL, I really do feel like there are few situations in life where you cannot find a glimmer of light, a positive spin, a rainbow lurking just round the corner even though you can barely see it.  And that has surely kept me feeling (mostly) upbeat and positive with a smile on my face when the situation would more than justify me stomping around under a black cloud.  Many people quite rightly get depressed as all hell in my situation and who can blame them? I feel lucky, in spite of it all, because I don´t feel depressed, or even very sad.  Not that I don´t have my moments. I am not made of stone or impervious to the seriousness of the situation.  But in my day to day I can look on the bright side and carry on.  And like a suit of armour, it makes me feel strong.

Don´t get me wrong.  Having my hair, looking well, feeling positive, none of this means it is not serious. It is serious.  My tumour was graded as T3N1M0.  Google cancer staging if you want to know more, it is about as fascinating to read as you probably imagine it to be, suffice to say it starts at 0 and gets more and more serious until T4.  The T is how far the tumor has grown beyond the original site into nearby tissues, N is the degree of nearby nodes affected, M is metastases (spread) to other parts of the body.   So it is fairly serious.  Don´t let my appearance fool you. But I feel like saying “I have cancer” implies an acceptance of this public face of cancer.  And that is a very real side to cancer but it does not represent all people with cancer.  And it doesn´t mean that one type is worse or better than the other because really, what kind of competition would that be?  It is just that within this big bracket of illnesses categorised as Cancer there is a whole wide world of experiences.  It is no longer this big bad that means only one path and one image and one outcome.  Reading about cancer on the web and you will see said more than once that cancer can be similar to a chronic illness, like diabetes, something that some people will learn to live with, some of them for a long time.

I do have cancer.  And working through this means that maybe I am a bit closer to accepting that it is okay to say that.  It doesn´t mean I am dying and it doesn´t mean I am a different person, I have an illness but I am still me.  And if that means that in some teeny tiny way I can show people that it doesn´t HAVE to mean your world is falling apart, it doesn´t HAVE to mean The End then that is okay.  More than okay.

this is absolutely not a list

I have never been one for New Year´s resolutions.  All that pressure.  Just no.  And yet I do still get that feeling a fresh new year brings, the desire to review and revise, get off on a fresh start, take some action to be this better version of myself that I imagine to be squirrelled away under the apathy. The me that, given free time and the slightest inclination, would choose to lie on the sofa watching some terrible and mesmerising documentary on TLC.  This year I feel like I need a plan.  Not resolutions, more a plan of action.  Because if there is one thing that helps the world make sense to me, it is A LIST.  If only everything in life could be sorted with a list I would be winning a Nobel Peace prize already.  House a mess? Make a list.  DIY to do? kids activities to register and pay for? Things to buy? Make a list!  Too many projects at work? Hell yeah, you know it, a list will make it all better.   It seems like the World can be fairly evenly sorted into list makers and non-list makers.  To those who do not List it is a pointless, fruitless, possibly disheartenening, exercise only serving to highlight how many things you still have to do. But my fellow list makers understand.  They know.  They know the pure satisfaction that comes from Crossing Things Off.  The sense of order and completeness it imparts.

I have a particularly vivid memory from when I was about 7 or 8.  I had a bunch of chores to do and I had a list of said chores.  Now before anyone wonders why a 7-year-old might have ´a bunch of chores´ and rushes in on judgement of my parents I should say –  both the contents of that list and where they came from are long lost to the mists of time.   The people pleaser I grew up to be, typical middle child, was already strongly present in me at this age and I was probably being an unbearable suck-up trying to garner favour with my parents and make my put upon older sister look bad.  Though also in fairness to my Little self, I doubt I was aware of these motivations at the time.  So don´t judge me too harshly.  So this desire to please, my Mum´s never ending to-do list of her own and, it is true, emphasis on children learning to pull their weight in however small a way culminated in this weekend morning (I presume I was not doing mid-morning chores on a weekday) with me wandering around doing little Jobs and ticking them off my list.  I do not know what the chores were.  Sweeping leaves off the driveway figures prominently.

All of this is BESIDE THE POINT.  The POINT. That I am trying to get to, and I apologise for you being exposed so early on to the ramblings of my mind but forewarned is forearmed and all that…  The POINT.  Is the list.  The pure satisfaction of scratching things off the list.  The memory isn´t about what the chores were, or the fairness or otherwise of doing them.  It is exclusively about walking around with this list of scribbled notes and the feeling of control and order and HAPPINESS that crossing each one off brought me.  So the list maker is strong in me and I think my general aversion to New Year´s resolutions is that sneaking feeling that I would be making a list of things that would not get crossed off.  And ultimately that would be more depressing and unsatisfying than not achieving any of the goals themselves.

But this year I do feel like I want to try and harness these feelings of fresh start, new beginnings, and actually make some kind of plan to help me make some headway on my vague good intentions.  The why I will get into later, it is likely to be long and rambling.  I am starting with this, just some writing to start getting some thoughts down on paper. I am not sure what form I want this to take.  The kind of ideas I have spinning around my head range from the mundane to utterly random and quite possibly ridiculous.  None of them, I am sad to say, are altruistic or well meaning.  This is purely about things I want to do in order to better myself, or improve my health, And my enjoyment of life.  Beautifully narcissistic right? But I guess that is the essence of the vast majority of blogs so I comfort myself that I am in good company.